The IACC was originally conceived not as a disability services agency, but as a means of enabling more efficient medical research on a condition that was widely seen as a genetic disease, with the goal of identifying autism genes for purposes of "prevention." Its first major contact with neurodiversity advocates came in late 2006, when Kevin Leitch collected signatures for a petition asking for respectful language in describing autistic people. Large numbers of pro-neurodiversity comments were submitted the next year, asking that the funds be directed toward research and services that would help the autistic population, rather than toward eugenic purposes.
This year, a significant change in tone can be seen in the IACC's notices requesting public comments. Most noticeably, there is now a subcommittee that is separately requesting public comments on services, in contrast to previous years when services were not even mentioned. Although there are still a few places in this year's Draft Strategic Plan where the word "prevention" appears, the committee is now being very careful to explain that it is referring to prevention of difficulties or challenges by means of early childhood services and therapies. It also expressly includes autistics as "stakeholders" from whom it seeks comments.
Those who submitted comments to the IACC over the past two years explaining the neurodiversity point of view, and who took the time to attend the public meetings and speak out about their opinions, deserve the credit for this change. Let's keep up the good work and send even more comments this year!
On behalf of the IACC, the National Institute of Mental Health has issued two Requests for Information (RFI):
Response Due 9/30/08: IACC Draft Strategic Plan for ASD Research is Available for Comment. The purpose of this time-sensitive RFI is to seek comments on the draft Strategic Plan from ASD stakeholders such as individuals with ASD and their families, autism advocates, scientists, health professionals, therapists, educators, officials of state and local programs for ASD, and the public at large. Please see the official RFI notice NOT-MH-08-021 at http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-021.html for more information and instructions for responding by the deadline of September 30, 2008. Responses should be directed to email@example.com. Please note: The draft Strategic Plan does not include cost estimates for implementation. However, the IACC has formed a workgroup to advise the IACC about the budgetary requirements needed to fulfill the research objectives described in the draft Strategic Plan. The IACC will review the workgroup recommendations at its next meeting on November 21, 2008.
Response Due 9/19/08 : Priorities for the Interagency Autism Coordinating Committee Services Subcommittee for Autism Spectrum Disorders (ASD) The IACC is interested in receiving your input and ideas about high-priority questions and issues surrounding services and supports to people with ASD of all ages, and specific research initiatives on ASD services and supports. Please see the official RFI notice NOT-MH-08-016 at http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-016.html for more information and instructions for responding by the deadline of September 19, 2008. Responses should be directed to firstname.lastname@example.org
For more information about the IACC, please see http://www.nimh.nih.gov/research-funding/scientific-meetings/recurring-meetings/iacc/index.shtml